A nationwide survey of bereavement care for siblings provided by paediatric palliative care teams.

Abstract

Background: Bereavement support is considered a core standard of care for paediatric palliative care (PPC) teams. Support for grieving siblings can present unique challenges. Developmentally appropriate care can help children navigate their grief experience.

Objectives: To describe the provider perspectives (mission and development) of bereavement care for siblings, and to describe the bereavement follow-up interventions offered for siblings by hospital-based PPC teams nationwide.

Design and methods: Qualitative study conducted by semidirected telephone interviews. At least one member from each PPC team was interviewed. Interviews transcribed verbatim were analysed using grounded theory.

Results: Twenty-one teams participated (response rate 91%). Most teams (80%) provided individual psychotherapy to families, and a few (28%) offered group interventions. PPC teams endeavour to expand their bereavement services and create a stronger collaboration network with community services. However, limited human resources, lack of facilities and financing, and geographical distances were frequent obstacles to bereavement care program development.

Conclusion: PPC teams support bereaved siblings as an integral part of palliative care. Although PPC teams cannot meet all the needs of bereaved families, they can serve as important reference points to consolidate knowledge of available local resources and offer well-informed guidance to families and community users. Greater public awareness of childhood bereavement and engaging with community structures could help overcome some of the common obstacles to service development. Further studies are warranted in evaluating bereavement services in France and in other healthcare systems.